Psychosomatics 46:1-6, February 2005
© 2005 The Academy of Psychosomatic Medicine
Live Organ Donation: Social Context, Clinical Encounter, and the Psychology of Communication
Owen S. Surman, M.D.,
Isao Fukunishi, M.D., Ph.D.,
Terre Allen, Ph.D., and
Martin Hertl, M.D.
Received May 5, 2004; revision received Aug. 9, 2004; accepted Sept. 14, 2004. From the Departments of Psychiatry and the liver transplant services of Massachusetts General Hospital and University of Tokyo Medical Center; and the Department of Communications Psychology, California State University, Long Beach. Address correspondence and reprint requests to Dr. Surman, Department of Psychiatry, Massachusetts General Hospital, WANG ACC-812, 15 Parkman St., Boston, MA 02114; osurman{at}partners.org (e-mail).
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ABSTRACT
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Organ transplantation is increasingly available to the thousands of patients who suffer from end-organ failure. There has been an attendant increase in demand for living donor participation. This combined with a bioethical focus on autonomy increases the burden of decision on donor candidates. The authors review the history of living donor participation in organ transplantation and explore the psychological dynamics of the clinical encounter between donor and transplant surgeon. The field of communication psychology lends to the understanding of coercion and to the importance of donors possessing a status of patient-hood in the classical Hippocratic condition.
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INTRODUCTION
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Participation of live donors in organ transplantation has been a function of recipient need, technological advancement, and public perception of the greatest good.
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HISTORICAL PERSPECTIVE
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Demand for solid organs began in the 1960s as developments in transplantation biology began to provide a viable alternative to hemodialysis. Early experience with cadaveric transplantation depended on administration of high-dose prednisone. The benefits of a functioning allograft were offset by a high rate of complications from anti-rejection management. Much better results were achieved with live donation from close biological relatives, well-matched for the major HLA antigens.
Notwithstanding the distinct advantage of live donor participation, there was considerable skepticism in the medical community about the psychology of donor altruism. Medical practice was paternalistic in the Hippocratic tradition.1 "Primum non nocere" was a defining principle. Medical consumerism was unheralded and the field of Bioethics was in its early stages of development and influence. Distribution of scarce resources for dialysis and transplantation proceeded with a "lifeboat" ethics model. Patients with systemic disease, advanced middle age, or psychological impairment were excluded.
The 1970s brought a more egalitarian perspective. The U.S. Congress legislated funding for end-stage renal disease in 1972. Criteria for recipient transplantation candidacy expanded. Qualitative data from Felner and Marshall’s study of 12 donors had demonstrated that properly selected donors could benefit psychologically from donor surgery.2 Supporting evidence accumulated in the 1970s and in the 1980s.3
The life-extending potential of live-donor organ transplantation gained public appeal. Advances in management of allograft rejection led to exciting new clinical applications. Bioethical focus on theories of Justice1,4 and enactment of the Americans With Disabilities Act led to increasingly inclusive selection criteria for transplant recipients. Waiting lists for cadaver organs grew, and tolerance for risk to living donors increased. The primacy of "Primum non nocere" was subject to challenge.5 Live donor partial liver transplantation from parent to child gained public acceptance in the 1990s. By mid-decade it became feasible to transplant the right hepatic lobe (up to 70% of hepatic volume) from a living donor to an adult with end-stage liver disease. Estimates of mortality associated with transplantation of the right hepatic lobe have varied from 0.25%6 to 1.0%. The lower of these figures represents an approximate 10-fold increase relative to the mortality of live-donor renal transplantation, which is widely considered to be 0.03%. Life-saving potential for the procedure received public support so long as the donor’s participation was voluntary, fully informed, and unassociated with financial or psychological coercion.
The impact of public opinion and growth of consumerism in American culture led to a decline in the primacy of Hippocratic paternalism.1 The zeitgeist in medical ethics has increasingly favored the principle of "autonomy."7 The growth in autonomy has come at a price. The greater burden of decision-making has shifted from the surgical team to candidates for donor surgery. This is especially important in live-donor right lobe liver transplantation. The reported incidence of adverse events has varied widely. One center reported a 67% incidence of adverse events.6 The incidence of adverse events in renal transplantation is generally agreed upon as less than 5%. There has, however, been some liberalization of medical standards for donor selection. On some occasions, for example, kidney donors have been allowed to go forward despite evidence of mild hypertension.8
Inaccessibility of cadaver donor organs remains a leading factor in morbidity and mortality of patients with end-organ failure. This has led to an expansion of live-donor candidates. Inclusion of biologically unrelated donors is common now in kidney transplantation but was not favored by the medical community in the 1980s.9 Public opinion has supported involvement of unrelated donors. Spital et al. reported that 57% of respondents to a Gallup poll would give a kidney to a friend.10 A recent survey of 100 liver transplant surgeons revealed a significantly greater acceptance of liver transplantation from unrelated live donors by the public versus the transplant community.11 The public is willing to accept significantly greater risk to the donor.11,12
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DONOR SELECTION FOR LIVE-DONOR LIVER TRANSPLANTATION: DEFINING COERCION
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The transplant community is in full agreement that live donor participation must be free of coercion. The extent to which events are or are not coercive is less clear. Consider a semantic differential with a range of zero coercion to extreme coercion. Social pressure by the intended recipient or family on an unwilling donor would rank high on the scale. Payment of the donor is illegal in almost all countries and would also rank high, although some advocate for legalization of organ sales.13 Health of the recipient and urgency of needed intervention is another variable. An ambivalent donor would less easily withdraw if the recipient’s condition is imminently life threatening or the suffering intolerable.
Cultural factors also impact donor decision making. For example, primacy of individuality in North American culture contrasts with strong social identity in Japanese culture.14 Participation of nuclear family members as live donors is expected in Japan, but unrelated or spousal donation is generally unacceptable in Japanese medical tradition.
Psychopathological factors are another consideration. A previous report of one of the authors (O.S.S.) told the case of a woman whose history of childhood sexual trauma may have been a factor in her request to be an organ donor for her lover’s ex-wife.15 More recently, a borderline psychotic Japanese man requested that his psychiatrist arrange an opportunity for him to give a portion of his liver to anyone in the United States awaiting liver transplantation. Self-perception of worthlessness may have been the underlying factor.
Donor candidates may also come forward for reasons of guilt or to achieve status or favor with the recipient. The donor may believe that likelihood of "being a match" is low and then find it difficult to withdraw.
The process of informed consent also may be unintentionally coercive. The donor surgeon is a stakeholder whose enthusiasm "may be taken as tacit assurance for the donor that no harm will follow."16
Homan emphasized the importance of "recognizing the intimate relationship between our cognitive and emotional development." Speaking to the role of the unconscious, he concluded, "autonomy and community are inextricably linked."17 This notion is important in understanding the motivation of partial liver donors as well as motivation of the donor surgeon and surgical team. Labeling the event of donation as coercive reflects cultural norms and personal biases—both subject to change with time.
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DOCTOR-PATIENT COMMUNICATION: IMPARTING AND GATHERING INFORMATION
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In their seminal paper on the psychology of organ donors, Felner and Marshall aver, "The concept of ‘informed consent’ is just another myth."2 Donor decisions were often immediate and formulated prior to objective inquiry. Donors often proceeded in passive fashion "and let the selection process decide for them." Once a decision occurred, all remained committed.
Scholars of communication psychology refer to the "strategic message" in human discourse. From this perspective the strength of the "strategic trajectory" is determined by the donor’s "attribution of meaning." Donors tend to interpret new information in a selective fashion in support of their initial choice. For example, Felner and Marshall described that surgical informed consent and discussion of possible adverse events were often seen as reassuring (i.e., the surgeon "must be honest and therefore capable and I can place my life in their hands without any danger").2
Having decided to proceed, donors hold to the strategic message to convince the transplant team that a reasoned and considered decision has been made and that there is full capability and social support for going forward. Olbrisch et al. referred to this process of "impression management," adding that donors may lack self-awareness or may be disingenuous regarding their apparent altruism. Frank deception is possible but uncommon.18
The donor may understate or sidestep discussion of fear. This may be especially likely when there is a strong perception of duty to the recipient. Another previous report of one of the authors (I.F.) described a case in which projective psychological testing revealed an unspoken fear of injury.19
Preconceived donor expectation may be followed by unanticipated postoperative complications. Olbrisch et al. found that donors who have not had prior major surgery may be more prone to a belief that they will quickly return to work following the operation.18 In a survey of 27 partial liver donors, Beavers et al. found that one-third of patients reported more pain than expected, notwithstanding that 93% of those surveyed reported a full understanding of the surgical process prior to the operation.20
Adding to the complexity of informed consent is the observation by communication psychologists that nonverbal communication is often more powerful than the spoken word. Despite full spoken and written disclosure of potential difficulties, the donor may respond consciously or unconsciously to the genuine confidence of the surgical subspecialist.
The surgeon, as well, is influenced by developmental and genetic factors as well as by cultural influence and personal motivation. Surgeons vary in personal belief such as the moral duty of family members to come forward on behalf of the recipient. There is also individual variation in consideration of "equipoise." Tolerance for risk to the donor varies among surgeons and among transplant programs. To our knowledge, this remains an unstudied variable.
The surgeon may "cut to cure" but the risk of right lobe liver donation does not cure the donor, although he or she may benefit psychologically. Surgeons may vary in perception of the postoperative pain experience, and they may be subject to a degree of denial. Delegation of postoperative pain management to an independent pain management team is not an acceptable solution to this problem. Risk of excessive sedation in the setting of reduced hepatic volume requires that the donor surgeon must determine the optimal approach to pain management.
Beavers et al. found that 64% of right lobe donors reported complications but stated that they would still choose to undergo the procedure. Of all partial liver donors in their series, 40% reported adverse events that did not appear in the medical record. These authors point to a lack of consensus of what represents an adverse event and to the likelihood that many donor complaints may be perceived by the surgical staff to be trivial.20 These observations are important in assessing the results of other outcome studies.
Brown et al. found a 14.5% incidence of adverse events in a retrospective survey of 82 liver donor programs in the United States.21 Umeshita et al. presented comparable findings: a 12.4% adverse event incidence in their retrospective study of 1,841 partial liver donors from 46 Japanese transplant centers.22 These numbers are an aggregate of findings from right lobe donors and those donors who underwent segmental left lobe resection. While that is quite clear in both articles, there is the possibility that some practicing surgeons might overlook that aspect or overlook the retrospective nature of these reports. This is not to suggest that the surgeon would lack scientific qualifications but rather that there may be psychological defenses at play that impact perception and communication of risk.
There is an inherent conflict in meeting the potentially competing needs of donor and recipient, and there is a lack of evidence-based data to help us objectively sort through that process. This is less the case if the donor stands to benefit and is highly motivated. In a qualitative study, Lennerling et al. reported that spousal kidney donors expected improved quality of life following donor surgery.23 This hypothesis may be cautiously extended to liver transplant operations with related living donors. Parent-to-child liver donation is also associated with intense feeling. Some health care professionals question whether there is ever a net benefit to the donor. This extreme point of view is at odds with clinical practice, but those who adhere to such a philosophy argue that transplantation psychiatrists and social workers are biased by identification with the surgical service.
There is clearly a need for rigorous accumulation of data regarding the long-term outcome and quality of life in donor surgery, especially in the case of the more recently developed procedure of right lobe liver transplantation from live donors. Fukunishi et al. found in their 1-year posttransplant study of 40 partial liver donors that four experienced symptoms of posttraumatic stress disorder.24 To our knowledge, as yet there has been no comparable study in the United States.
There must also be sufficient field strength to meet the technical demands of donor surgery and the availability of optimal postoperative care. Death of a right lobe hepatic donor in 2002 at New York’s Mount Sinai Hospital led the New York State Department of Health to formalize rules that supported state of the art care of the donor. One requirement is that live-donor liver transplant programs must have a "donor advocate team" consisting of an independent medical specialist, a social worker who works with donors but not with their intended recipients, and a transplantation psychiatrist. The donor advocate team shares in an assessment of donor suitability and advises the donor surgeon. If the donor surgeon overrides recommendations of the donor advocate team, the reason for doing so must be documented and is subject to future review.25 The Conti Committee, which formulated these regulations, debated as to whether participation as a donor advocate should be restricted to those uninvolved in transplantation or uninvolved in the specific transplant center. The Committee determined that advocates must have fundamental knowledge of the transplant process and engage in an effective consulting relationship with the team.
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THE LIVING DONOR AS SURGICAL PATIENT
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Viewed from an entirely deterministic standpoint, we may wonder whether the donor has "free will." It is hard to avoid such a question when an anxious donor is determined to undergo right lobe hepatectomy on behalf of a sibling whose liver failure is a product of previous self-abuse. Prospective donors sometimes feel that they could not live with themselves if they declined or if the offer to donate was countermanded by the surgical team. Konner’s response to this question of free will is that we live in "a subjective world of choices." Our capacity to evaluate the choices of another is a function of our subjective experience.26 Some scientists have attempted to search for the neural substrate for our ability to consider another’s intentions. Studies to date suggest that several brain structures are involved, including the anterior paracingulate, temporal pole, superior temporal sulcus, and amygdala.27 Whatever the basis of this talent it is at best a subjective approximation. Understandable that some would give up on the process altogether and leave the donor candidate to an autonomous decision. This conundrum regarding agency or autonomy is not however unique to donor evaluations. Medical practice as an art requires us to make such judgments on a regular basis. The same holds true for a determination of equipoise. Is the risk to the donor in balance with benefit to the recipient? Risk/benefit analysis is a fundamental part of clinical practice.
Another consideration is how we most effectively challenge the "message trajectory." The question applies to both the donor candidate and the surgeon. The donor intends to donate. The surgeon intends to do his best for his patient, the intended organ recipient. If we also designate the donor as "patient" the situation changes—at least in theory. The surgeon must now see his evaluation of the donor as a clinical encounter.8,28 Duty to the donor is in balance with duty to the recipient. The donor advocate team allows for an additional safeguard. The surgeon can incorporate the team’s recommendation as a form of consultation. That strengthens the risk/benefit analysis and further elucidates the question of equipoise.
Psychiatric evaluation may also be strengthened if psychiatrists accept the donor’s status as patient. The evaluation becomes more than a judgment of capacity. It is a clinical challenge to find the greatest good for the donor.
Guidelines for psychosocial evaluation of donors have been discussed elsewhere.15,18,29 Along with decisions about medical and psychosocial capacity, there is interest in the donor’s altruistic intent. Sober and Wilson stated that altruistic acts are associated with risks to the individual but may have evolutionary anthropologic significance in the capacities of societies to compete successfully.30 They also observe that altruism is often accompanied by egoism. Spousal and parent-to-child organ donation may have a net egoistic advantage with regard to the donor’s subsequent quality of life. Others may experience spiritual or intellectual fulfillment or an improved sense of self-worth. The transplant team in turn will have a sense of whether the donor’s motives appear genuine.
Allowance of sufficient time for donor evaluation is also of importance. The Conti Committee concluded that it is impossible to adequately study the donor if the recipient is in need of emergency surgery. From a surgical standpoint, it is also advantageous for critically ill patients to get a complete cadaveric organ.
At times there will appear to be lack of equipoise. Consider a young adult who is willing but anxious and ambivalent and whose relationship with the intended recipient is unclear. One approach is to rely on the very process of medical paternalism that has been out of vogue. The clinician makes it clear that the donor is a patient whose best medical interests must be medically addressed. The donor’s wish to proceed with right lobe hepatectomy is "on the record," but the team may decide against the operation if does not appear medically prudent.
Donor confidentiality must also be assured. In no case should the recipient or the recipient’s family be told that the donor is suitable until the work-up is complete. One advantage of independent assessments by the donor surgeon and the patient advocate team is that there are additional perspectives and a potential source of significant clinical material.
We believe that the donor should be told at the outset that the team does not indicate to the recipient that there is a psychological issue precluding live-donor liver transplantation. One need not fabricate a reason. The recipient can be told that the donor is not medically suitable and that HIPAA regulations demand that the circumstances be held in confidence.
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CLINICAL CONTEXT OF DONOR SELECTION AND INFORMED CONSENT
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Our point of view is that the process of donor selection and informed consent can be seen in the context of clinical encounters that must occur in other surgical situations familiar to physicians, surgeons, and general hospital psychiatrists. This is especially relevant to consultation psychiatry. Some consultation-liaison psychiatrists perceive there to be a conflict of interest in the donor selection process. There is a risk that the psychiatric consultant may choose to focus narrowly on the donor’s capacity to consent. We encourage our colleagues to regard the donor as a surgical patient for whom the donor operation is viewed with its attendant risks and benefits.
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ACKNOWLEDGMENTS
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Presented in part at the 17th World Congress on Psychosomatic Medicine, Waikoloa, Hawaii, August 23–28, 2003.
Dr. Surman served as the psychiatric consultant to the New York State Committee on Quality Improvement in Living Liver Donation, 2002.
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REFERENCES
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- Veatch R: Transplant Ethics. Washington, DC, Georgetown University Press, 2000
- Felner CH, Marshall JR: Twelve donors. JAMA 1968; 206:2703–2707[CrossRef][Medline]
- Surman OS: Psychiatric aspects of transplantation. Am J Psychiatry 1989; 146:972–982[Abstract/Free Full Text]
- Rawls J: What is justice: classic and contemporary readings, in Justice is Fairness and A Theory of Justice. Edited by Solomon RC, Murphy MC. NewYork, Oxford University Press, 1990, pp 305–312
- Moore FD: Three ethical revolutions: ancient assumption remodeled under pressure of transplantation. Transplant Proc 1988; 20( suppl 1):1061–1067
- Busuttil RW: Changing faces of liver transplantation: partial grafts for adults. The Paul Russell Lecture in Transplantation, Massachusetts General Hospital, Mar 24, 2003
- Parascondola M, Hawkins J, Danis M: Patient autonomy and the challenge of clinical uncertainty. Kennedy Institute of Ethics Journal 2002; 12:245–264[Medline]
- Delmonico FL, Surman OS: Is this live-organ donor your patient? Transplantation 2003; 76:1257–1260[CrossRef][Medline]
- Surman OS: Toward greater donor organ availability for transplantation (letter). N Engl J Med 1985; 312:318[Medline]
- Spital A, Spital M, Spital R: The living kidney donor: alive and well. Arch Intern Med 1986; 146:1993–1996[Abstract]
- Cotler SJ, Cotler S, Gambera M, Benedetti E, Jensen DM, Testa G: Adult living donor liver transplantation: perspectives from 100 liver transplant surgeons. Liver Transpl 2003; 9:637–644[CrossRef][Medline]
- Cotler SJ, McNutt R, Patil R, Banaad-Omiotek G, Morrissey M, Abrams R, Cotler S, Jensen DM: Adult living donor liver transplantation: preferences about donation outside the medical community. Liver Transpl 2001; 7:335–340[CrossRef][Medline]
- Goyal M, Mehta RL, Schneiderman LJ, Sehgal AR: Economic and health consequences of selling a kidney in India. JAMA 2002; 288:1589–1593[Abstract/Free Full Text]
- Surman OS, Cosimi AB, Fukunishi I, Kawaii T, Findley J, Kita Y, Makuuchi M: Some ethical and psychiatric aspects of right-lobe liver transplantation in the United States and Japan. Psychosomatics 2002; 43:347–353[Abstract/Free Full Text]
- Surman OS, Prager LM: Organ failure and transplantation, in Massachusetts General Hospital Handbook of General Hospital Psychiatry. Edited by Stern TA, Fricchione GL, Cassem NH, Jellinek MS, Rosenbaum JF. Philadelphia, Mosby, 2004
- Surman OS: The ethics of partial-liver donation. N Engl J Med 2002; 346:1038[Free Full Text]
- Homan RW: Autonomy reconfigured: incorporating the role of the unconscious. Perspect Biol Med 2003; 46:96–108[Medline]
- Olbrisch ME, Benedict SM, Haller DL, Levenson JL: Psychosocial assessment of living organ donors: clinical and ethical considerations. Progress in Transplantation 2001; 11:40–49
- Fukunishi I: A truncated tree: anxiety before living kidney transplantation in Japanese recipients (letter). Nephron 1998; 79:375–376[CrossRef][Medline]
- Beavers K, Sandler RS, Fair JH, Johnson MW, Shrestha R: The living donor experience: donor health assessment and outcomes after living donor liver transplantation. Liver Transplant 2001; 7:943–947[CrossRef][Medline]
- Brown RS Jr, Russo MW, Lai M, Shiffman ML, Richardson MC, Everhart JE, Hoofnagle JH: A survey of liver transplantation from living adult donors in the United States. N Engl J Med 2003; 348:818–825[Abstract/Free Full Text]
- Umeshita K, Fujiwara K, Kiyosasa K, Makuuchi M, Satomi S, Sugimachi K, Tanaka K, Monden M; Japanese Liver Transplantation Society: Operative morbidity of living liver donors in Japan. Lancet 2003; 362:687–690[CrossRef][Medline]
- Lennerling A, Forsberg A, Nyberg G: Becoming a living kidney donor. Transplantation 2003; 76:1243–1247[CrossRef][Medline]
- Fukunishi I, Sugawara Y, Takayama T, Makuuchi M, Kawarasaki H, Surman OS: Psychiatric disorders before and after living-related transplantation. Psychosomatics 2001; 42:337–343[Abstract/Free Full Text]
- Live adult liver transplantation services. Section 405.22 of part 405 of Title 10 of The Official Compilation of Codes, Rules and Regulations of The State of New York (or short form 10 NYCRR 405.22)
- Konner M: The buck stops here: do we have free will, or are all of our choices predetermined? Nature 2003; 423:17–18[CrossRef]
- Zimmer C: How the mind reads other minds. Science 2003; 300:1079–1080[Abstract/Free Full Text]
- Surman OS, Hertl M: Donor safety comes first. Lancet 2003; 362:712
- Leo RJ, Smith BA, Mori DL: Guidelines for conducting a psychiatric evaluation of the unrelated kidney donor. Psychosomatics 2003; 44:452–460[Abstract/Free Full Text]
- Sober E, Wilson DS: Unto Others: The Evolution and Psychology of Unselfish Behavior. Cambridge, Mass, Harvard University Press, 1998
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ABSTRACT
INTRODUCTION
